Terminal Baby at Center of Treatment Battle Returns to Canada

April 21, 2011— -- After receiving a tracheotomy at a St. Louis hospital that his native Canadian government denied him, Baby Joseph, the 15-month-old terminally ill infant at the center of an end-of-life debate, has returned to his Ontario home where he is set to spend his remaining days with family.

"The tracheotomy was successful," said the Rev. Frank Pavone of New York City-based Priests for Life, Joseph's medical care at Cardinal Glennon Children's Medical Center in St. Louis. Priests for Life is an organization which lobbies against abortion rights and euthanasia and was active in advocating for Baby Joseph's further treatment in the U.S.

"We were anticipating that he would need to go to an intermediate facility after the procedure but he responded so well that he's been off the machines and breathing tubes completely for a week. He's breathing on his own," he says.

Joseph Maraachli, who has come to be known as "Baby Joseph," was thrust into the forefront of the end-of-life debate in February, when Canadian doctors told his parents, Moe and Nader Maraachli, that their baby's degenerative disease was so bad that no treatment would bring him out of a persistent vegetative state. Joseph suffers from a progressive neurological disease called Leigh Syndrome -- the same disorder that claimed the life of Joseph's then 18-month-old brother eight years ago.

Though health care professionals presented Joseph's parents with a consent form that would allow doctors to take him off life support, the Maraachlis refused to sign the waiver and fought for their son to receive a tracheotomy -- a procedure that would allow them to care for their baby in his final days at home.

For months Baby Joseph's life was literally in negotiations as pro-life advocacy groups fought the Canadian government to allow him the procedure, underscoring the sensitive balance many parents may face between keeping their babies alive as long as possible and pouring money and medical resources into a losing battle.

The case was brought to the Consent and Capacity Board, an independent body created by the government of Ontario, and then a supreme court judge. Both entities ruled that Baby Joseph's breathing tube should be removed. It was only after Priests For Life offered to pay for Baby Joseph's medical costs that the infant was able to get the tracheotomy on March 21. The cost of the jet to the hospital, chartered with Kalitta Air, was donated to the family.

"I would call this a success," Rev. Pavone says. "We did this based on the value of the child's life here and now, not based on any specific medical outcomes. The family wasn't looking for anything extraordinary, just to be able to have him at home."